Kymee’s therapist is working to improve Kymee’s mouth functionality. So what does a baby mouth do? Kiss, Eat, and Speak.
Kymee loves to give kisses, which really means she licks all over my face. She also give wonderful Eskimo Kisses. But lately she loves to lean her forehead against my forehead, sometimes head butting me to say, ” I love you, Mommy.” When she sees Spartan, she sticks out her tongue for a doggy kiss.
No therapy needed here (Only napkins to wipe off the extra slobber)
Before Kymee had surgery, she said mostly vowels, with a few “mmmmms” thrown in. Nice for me because the only word she could form with her mouth is “Mama.”
She also started making these weird guttural sounds from the back of her throat – like she was growling. This may have practical if she had been learning Arabic, or maybe German. The therapist explained that all babies speak all language sounds. The language of their environment determines which sounds are reinforced and which are ignored or discourages, so eventually dropped. Because the muscles in Kymee’s mouth have not developed properly, we must encourage sounds which are not always “correct” but which have not the closest sound, but the closest mouth formation to the sound we want to achieve.
For example, Kymee began saying “nnnnn” after surgery. This is good because the tongue is in the front of the mouth.Ds are too hard a sound yet to make with her new palate. So, when Kymee says, “Nana” it means “Dada.”And although “Gaga” sounds closer to “Dada” than “Nana,” The n sound is formed in the front of the mouth – like the d, whereas the g sound is formed in the back of the throat. If the g sound is encouraged, Kymee’s speech will be harder to correct in the future.
So, this is Kymee’s “Nana.”
In order to encourage muscle tone and development in the mouth, which will later help her speech, we were given this odd toothbrush.
Along with cleaning her teeth, we can gently massage the gums and palate after it heals fully. Kymee doesn’t like it too much.
Kymee loves to eat, but there are 4 main problems with her eating.
- Food still comes out her nose.
- She has become a picky eater.
- She does not have a “stop” or even a “pause” button on her appetite.
- She is under-weight (which oddly enough doesn’t seem possible with #3 being true as well)
Food & Nose Challenge:
I thought this would end when the surgery repairing her cleft was complete. The therapist explained that when you eat the soft palate moves back and closes the opening to the nose so the food will go down the throat. However, Kymee has not developed the muscles needed to move the soft palate back – so some food goes up into her nose instead of down the throat. This is called “velo-pharyngeal” incompetence. At this point, we are hoping time will develop the muscles needed, and therapy is not being done.
After surgery, Kymee decided she would no longer drink formula. She purses her lips together, she screams. She holds it in her mouth and doesn’t swallow. She lets it drip out of her mouth as she lets us know in high pitched squeals that “THIS IS DISGUSTING.” I don’t blame her – in fact, I quite agree. However, formula has high nutritional, and caloric value. The therapist, suggested yogurt, and or soy milk. We are having success with both – but Kymee is still not getting all the nutrition she needs.
Can’t Stop Eating:
Kymee never gets full. She can eat half of a honeydew melon, and scream when I stop feeding her. She will eat until she throws up. I try to measure everything out to give her the exact ounces she needs, than I let her scream for 15 minutes at the end of feedings. Very frustrating.
The therapist put a few things together I would never have thought of. 1) Kymee’s inability to stop eating; 2) Kymee’s inability to stop crying once she starts; 3) Kymee’s unusually long attention span – she can play with a deck of cards for 45 min to and hour!
All three traits are obsessive, and she seems to have no self-control (self-regulation). Even a good thing (like the attention span) is bad when it is not age appropriate. Self regulation is a brain-stem function (like breathing) and most of the time it happens without being taught. It is not a learned behavior. However, if there is a problem in this area, it can be taught and practiced using other parts of the brain. Right now, we are going to keep an eye on Kymee and see how these skills progress naturally.
The therapist also suggested that Kymee is not getting enough oral stimulation because she has not been sucking sense birth. So we have a new “toy” to help work out the mouth muscles. Meet “Gator” Kymee’s friendly juggle.
We hold “Gator” against Kymee’s cheeks, and she chews on him. It provides sensory imput to the lips, gums, tongue, palate, and jaw.
Although she loves to eat, she is small for her age. When she came to live with us, she was 90% in height and 50% in weight. Before surgery, she was 50% in height and 25% in weight. Now, she lost weight during surgery and recovery so now she is 50% height and 15% weight. She is 27 in, and 17 lbs 12 oz.
Because of these challenges, a nutritionist was called in.
Kymee is on a new diet. Emylee is jealous. So am I. It is a high-fat diet. We are to add real cream to her fruit, butter and olive oil to all her meats and veggies, and she is to eat high fat cheese, yogurt, and dairy products. Add more meat and egg yokes to her diet. I don’t think she’s going to want to go back to watered down flavorless baby food from jars.
What we are hoping is that she can eat the same ounces of food, but feel fuller, be happier, and gain some needed weight before she slips into the “dangerous zone” (which is under 10% weight).
I have no doubt Kymee will use her mouth for more than just slobbery kisses very soon!